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First official UK death from chronic fatigue syndrome

By Rowan Hooper

Chronic fatigue syndrome has been given as an official cause of death for the first time in the UK. CFS, which is also known as myalgic encephalomyelitis (ME), has occasionally been recorded on death certificates in the US and Australia but it is far from being accepted as an organic disease.

On Tuesday, coroner Veronica Hamilton-Deeley of Brighton and Hove Coroners Court, UK, recorded the cause of death of a 32-year-old woman as acute aneuric renal failure (failure to produce urine) due to dehydration as a result of CFS. The deceased woman, Sophia Mirza, had suffered from CFS for six years.

CFS, which is also known as myalgic encephalomyelitis (ME), has a variety of devastating symptoms ranging from extreme weakness, inability to concentrate and persistent headache. Sufferers can have the disease for years, but its cause remains controversial, with fiercely opposing views from psychiatrists on one side and biologically minded physicians on the other.

The coroner’s verdict is a breakthrough for those who argue that CFS is a physical condition, possibly with its roots in the immune system. Dominic O’Donovan, a neuropathologist at Oldchurch Hospital in Romford, UK, who gave evidence at the inquest, said that Sophia’s spinal cord showed inflammation caused by dorsal root ganglionitis – a clear physical manifestation of the disease.

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Overactive immune response

CFS specialist Jonathan Kerr of St George’s, University of London, says he is not surprised that inflammation in the spinal cord has been found in someone with the disease, as it is known to be associated with it. He says that the immune system tends to be over-activated in people with CFS and this may underlie the inflammation of the neurological tissue.

“People have been reluctant to subscribe to the biological side because of the power of the psychiatric lobby,” says Kerr. “Doctors are sceptical about the existence of CFS and there is controversy about its underlying cause.”

Abhijit Chaudhuri, a consultant neurologist at the Essex Centre of Neurological Science who worked with O’Donovan on Sophia’s case, says the changes to her spinal cord may have resulted in symptoms of chronic fatigue.

“Sophia’s case sheds light on CFS because there were changes in her dorsal ganglia – the gatekeepers to sensation in the brain – and we know that fatigue depends on sensory perception,” he says. “What we need to understand is what happens that makes fatigue more persistent, without there being an obvious systemic disturbance.”

Rigorous inquest

The inquest was rigorous, Chaudhuri says, and considered all other potential causes of death consistent with the post-mortem results, such as sleep apnoea and drug use, and rejected them.

The verdict was welcomed by Sophia’s mother, Criona Wilson, who had to fight for recognition that her daughter was physically – rather than mentally – ill. Sophia was sectioned for two weeks under the Mental Health Act in 2003.

“I’m extremely pleased that CFS/ME was identified on the death certificate as one of the primary causes of Sophia’s death,” she says, “because this can be used to reinforce the need for biomedical research into the disease.”

Editor’s note&colon; The original version of this story stated that the UK case was apparently the first in the world. Our thanks to all the readers who pointed out earlier cases in the US and Australia.